IHC Hot Issues - January/February 2018

Hot Issues is an electronic newsletter produced independently for the IHC advocacy team. The newsletter covers education, current political developments, submissions, family concerns, disability topics and events.

People with autism who have experience of criminal justice system sought for research

Census may lead to a lower reporting of disability

The census will be held on Tuesday 6 March. The census is held every five years to find out demographic details of people in New Zealand. Disability questions were added to the census in 1996 and from that year a Disability Survey following the census has surveyed those who identified as disabled for a more in-depth understanding of disability. However, in 2012, the Government decided not to carry out the Disability Survey every census and there will not be one this year.

The disability questions for the 2018 census have been changed from those asked in the 2013 Disability Survey, which identified 24% of New Zealanders as disabled. The questions are now based on the Washington Group Short set of questions:

1. Do you have difficulty seeing, even if wearing glasses?

2. Do you have difficulty hearing, even if using a hearing aid?

3. Do you have difficulty walking or climbing steps?

4. Do you have difficulty remembering or concentrating?

5. Do you have difficulty washing all over or dressing?

6. Using your usual language, do you have difficulty communicating, for example understanding or being understood?

Response options

a) No – no difficulty

b) Yes – some difficulty

c) Yes – a lot of difficulty

d) Cannot do at all

The Washington Group recommends that people who have ‘a lot of difficulty’ with at least one of the activities be counted at disabled.

These questions focus on physical impairment – and disability as experienced by older people – not the intellectual, invisible disability or neurological impairments that many younger people experience. Many of those with autism or intellectual disability who answer a) or b) for the questions will not be counted as disabled.

Statistics NZ notes that disability is likely to drop from 24% to about 10% of the population under this new measure and urges that this should not be considered a prevalence rate. However, a lower percentage of disability in the population may have severe implications for disability policy and resourcing. This is very disappointing as we already have poor data and support for conditions such as learning disability and autism and they will become even more invisible in the official statistics.

We hope that the 2023 Census and a follow-up Disability Survey will ask more useful and encompassing questions about disability for the New Zealand context.

Royal Commission into historic abuse announced

An announcement on 1 February that there would be a Royal Commission of Inquiry into Historical Abuse in State Care is very good news for those who have been lobbying for an inquiry for many years. A Royal Commission recognises the gravity and size of the issue. Former Governor General Sir Anand Satyanand has been appointed Chair but the terms of reference will not be finalised until after a consultation process. Sir Anand chaired an earlier process, the Confidential Forum into Psychiatric Hospitals, which in 2005 started the restorative process of hearing the stories of those who experienced abuse in state care before 1992. However, the forum was not properly resourced to hear the stories of those from the psychopaedic institutions and only a few people with intellectual disabilities made submissions.

Hopefully, the Royal Commission will have the resources and knowledge to support those with intellectual and other disabilities to tell their stories safely and confidentially. One concern for the disability sector in the draft terms of reference is the 1950 to 1999 time frame. Forced institutionalisation of disabled children began much earlier than this and we have had numerous reports of abuse in residential care under state contracts since 1999. Unfortunately, many of the disabled people who suffered abuse in state care are no longer alive, but there will be an opportunity for family members or allies to make submissions on their behalf.

Mental Health Review

The Government has also announced a review into mental health services. Many people with intellectual disabilities or autism experience anxiety, addictions or other mental health issues but find it hard to get help. Or they get stuck in systems that do not understand their needs, such as the adults with autism held in residential units under the Mental Health Act.

The Inquiry into Mental Health and Addiction will be chaired by former Health and Disability Commissioner Professor Ron Paterson and will report back to the Government by the end of October. The inquiry panel wants to hear from people with mental health issues and addiction, the wider community and the mental health sector about their experiences and expectations. The terms of reference are broad. It will have a particular focus on fair access to quality services and better outcomes, especially for Māori and other groups that have the poorest outcomes. “I want the inquiry to report back with a clear assessment of the current strengths and weaknesses of our community response to mental health, and of the response of the broader mental health system. We need fresh thinking and I look forward to recommendations on how we can make our care, support and other resources more accessible, effective and responsive to community need,” says Prime Minister Jacinda Ardern.

Eliminating seclusion, reviewing restraint

Chief Ombudsman Peter Boshier has now released official opinions on the two complaints about seclusion of children with autism at Miramar Central School and Ruru Specialist School. He criticised the schools and the Ministry of Education for not having clear guidelines at the time. He praised parents at both schools for helping to facilitate the recent law change to the Education Act eliminating seclusion in schools.

However some principals are calling for a review of new rules as they are unsure about the rules on restraint and seclusion when faced with students with severe behaviour issues. Education Minister Chris Hipkins is open to that, saying "the balance is not quite right".

There are also two new national projects addressing the seclusion of adults. The Pathways to Eliminate Seclusion by 2020 collaborative is being led by the Health Quality & Safety Commission and Te Pou and will start in March 2018. District health boards will be invited to participate and put forward clinicians, consumers and whānau/families to attend regionally based learning opportunities and co-design workshops. The second initiative, Improving Service Transitions, will begin in June 2018 to improve the process of managing the ongoing care for mental health consumers transitioning between different health care providers or locations.

Hot Issues has also reported several cases of teenagers who have been held in prison cells as there was nowhere suitable for them. Children's Minister Tracey Martin said $15.7 million would now go towards improved care placements.

Disability delegations and briefings to incoming ministers

Carmel Sepuloni is the new Minister for Disability Issues. Other ministers have delegated specific disability responsibilities to associate ministers. Education Minister Chris Hipkins has delegated responsibility for Special Education to Tracey Martin. Health Minister David Clark has delegated responsibility for disability support services for those under 65 to Julie Anne Genter. Public servants also prepare what is known as Briefings to the Incoming Minister (BIM) to advise them about the scope, finances and relevant and priority issues in their portfolio area. These make interesting reading. For example, the BIM to the Minister of Disability Issues provides data about disability in New Zealand, what is funded, information about the UN Convention, projects and various priorities of the Office.

New initiatives in inclusive and special education

A recent report says that waiting lists for learning support services in schools are too long, with the average delay on early intervention services running to almost three months. The education sector says special education is in crisis, causing major stress on teachers, schools and students due to lack of resources and money. Students across the country still wait an average of 47 days for any support. The NZ Psychological Society says only school-aged children with extreme needs now receive services from an educational psychologist.

Education Minister Chris Hipkins says children with disabilities and behavioural problems are at the front of the queue for increased funding but the government would not redirect learning support funding from older teenagers to early childhood. “That means putting more money into the learning support system.”

The way in which schools work with children with disabilities and challenging behaviour will investigated by the Education Review Office next year. Chief Review Officer Nicolas Pole says the apparently increasing number of children with special needs has prompted the review and increased identification of students with dyslexia, autism, foetal alcohol syndrome and challenging behaviour.

IHC director of advocacy Trish Grant says there is a lot of evidence already about what is wrong with special education. “They're going to find out that the resourcing is stretched too thinly, that schools don't have enough in the way of resourcing to meet children’s needs and particularly those children with additional learning support needs”. However, Trish says an Education Review Office report is an excellent idea because it should help make the scale of the problem clearer.

Associate Education Minister Tracey Martin prefers action. “I personally would have thought we had all the information we need already. Our parents have told us again and again and again what is not working inside the system.” She has responsibility for special and inclusive education, and does regular updates on her work on Facebook. She responds to questions and explains the complex policy processes she leads.

Meanwhile Salisbury School is celebrating its reprieve from closure. Keeping Salisbury open was backed by both Labour and NZ First.

For those wanting skills and strategies to include and value all children at their local school, Berhampore School and IEAG are running a conference called ‘Creating Everyone’s School’, which invites teachers, learning support staff, caregivers, family members and others to explore inclusive education in a real school setting. Keynote speakers are Roger Slee and Olive Webb. It will run from 26 to 27 April at Berhampore School in Wellington.

Deportation reprieve for young disabled Fijian man

A young man with an intellectual disability facing deportation to Fiji was given a last-minute reprieve just before Christmas. Twenty-year-old Sagar Narayan’s application for residency had been rejected earlier this year, even though his family lived in New Zealand and there was no one left in Fiji to care for him. For nine years the family fought to keep him here and they have now been told he can stay permanently. Hopefully, this decision by the new Government signals a more compassionate approach to disabled immigrants.

People with autism who have experience of criminal justice system sought for research

Waikato PhD student Tanya Breen is seeking people to participate in her research. She is asking: “Are you an autistic person who’s been a suspect, accused person, or defendant in a criminal trial? Would you like to help make the system better for autistic people? If so, I’d like to talk with you … and I want to know what it was like for you to be suspected, arrested, charged with a crime, tried in court, or sentenced. Even if you did not go to trial, you could still have some very useful things to say, and I’d like to hear from you. With your help, I want to make New Zealand’s criminal justice system work better for autistic people. I want to hear from people who are at least 20 years old, have past (and not current) involvement with the New Zealand criminal justice system, and are living in the community.”

If you are interested and want to know more, please contact Tanya Breen on 07 8494240 or tanya@tanyabreen.co.nz